My son, in third grade at the time, was attending a small private school that rented space at a church. He had a music concert and I had no sitter for Sophia. There were only 25 students in the entire elementary. This presented an interesting challenge because the small crowd would be an advantage to Sophia but the down side was that Sophia’s every move and sound would be show-stopping obvious to all. As I often did, I set my hopes high and came home disappointed.
On the drive there, she became agitated in the car. Her older sister, Cecelia, merely glanced at Sophia and she started screaming. Her older brother was bouncing his leg ever so slightly and she was insisting he stop. It was going to take more than sitting in the back row and offering bubble gum to get through this night.
I started getting mad. This was not fair to my son. He worked hard and deserved our full attention at this event. We approached the intersection near the school and I saw a 7-11 quick stop. I told my husband to pull in. “I’ll be back in a minute,” I said.
Quickly browsing the aisles I filled my hands with anything I thought would capture her perseverative attention. Two boxes of band-aids to peel open, two bags of m&m’s to sort colors and eat, one box of crayons to peel the labels off, and a package of post-it notes to peel and stick. There. Hell or high water I was going to keep her occupied so I could enjoy this evening and watch my son.
Feeling a bit like Macgyver, I approached the clerk. When he handed my change back I asked him to break the dollar bill into dimes, nickels, and pennies. The change would be my fallback if she went through the other items too quickly.
With a renewed sense of confidence I got back in the car. We arrived at the church minutes later and Sophia fled from the car. I went with my son to help him find the other students. My husband took the girls to the front lawn to let them get some energy out before it started.
Once my son was situated, I came back to find them. I could see Sophia spinning in circles in the front lawn while my husband was sitting on the steps watching her. I sighed, took a deep breath and headed towards her. My other daughter Cecelia was very sweetly playing on the steps and watching the older kids. I could tell from the spinning just how the evening would go.
As I approached Sophia, my husband took Cecelia and went to find a seat in the back. We always sat in the back and near an easy exit. I hated that. I wanted to be like the other proud parents that sat near the front and could talk with other parents before the performance without being interrupted by a screaming kid or the need to explain why I was letting her open band-aids and stick them all over the outside of my purse.
In a fit of denial, pure frustration, anger, or my new found confidence in the loot I had from the quick stop, I grabbed Sophia’s hand and walked right past my husband and Cece to the front of the church. I took a seat, still of course on the end near the exit, but I was close to the front. And it felt good.
As she immediately crawled under the pew, I pulled out the band-aids and handed them to her. I turned to see my husband looking at me very confused as to what I was attempting to do. This was a breach in our family social protocol. Reluctantly, he and Cece came and joined us. “It will be fine” I said.
As she furiously peeled the band-aids and stuck them to my purse, the concert started. By the third song, we were on to peeling the crayons. Not bad, except my son had not even performed yet. I took a peek to check on her under the pew and she was gone. I turned around and there was no sight of her. As my husband and I stood up to go find her, we saw a little head pop up from the back pew like a jack in the box.
I made a dash for her. I was sure the noise from the concert was bothering her so I let her wander down the halls, knowing my son was not even on stage yet. When his turn came I was standing in the back swinging Sophia from side to side. She started grunting and making noise with her mouth. I covered it just after it had been noticed by about everyone in the room including my son.
It was time to break out the M&M’s. I carried Sophia back to our seat near the front, taking a few glances from the audience. Our seat was covered in band-aid wrappers and crayon peelings. My son took the stage and I took a deep breath. Sophia’s candy was just about gone by the time his songs were. That was long enough for Sophia so I took the girls out to the front lawn while the other children finished the concert.
When it was finished, I carried Sophia to find my son and the rest of the family. Of course it would not be a great concert without gluten filled refreshments in their classroom, so we headed that way. Within seconds of being in his classroom with so many people, the smell of food and loud conversations, I glanced to find Sophia sitting under a desk in the corner.
Okay, good choice Sophia, I thought. I attempted to stuff several cookies down as fast as possible and wave to a few people. I hurriedly moved through the art display to find my son’s. I knew he wanted to enjoy this evening and have fun with his friends, but Sophia was now thrashing about and demanding to go home.
So we did. As we always do. This is the moment we added a new social protocol for our family: from now on we are a two car family: One get-away car for Sophia and the other car for the rest of the family. We call it Plan B.
I suppose my husband’s advise to take a picture with my mind was good advice, as I recalled this memory well enough that it almost feels like I’m there again. The problem is that what I remember is Sophia. I remember my anger and frustration. I don’t remember the art work he displayed on the wall. I don’t remember the song he sang or any cute interactions with his friends.
If I were to begin a photo album or scrapbook for my two oldest children today, there would be three years of their life that I have almost no evidence that it existed. From about the time Sophia was 9 months old until about four, I rarely took a picture of my other children. We took no vacations. If there was a school event, my focus was on keeping Sophia preoccupied enough to not have a meltdown or run away and get lost. We always stood in the doorway or very back of the room so we didn’t draw attention and so there was an easy exit if the whole thing went to hell. I suppose my husband could have grabbed the camera and taken some, but we always make better decisions looking backwards. He always encouraged me to “take a picture with my mind.”
Once I realized Sophia had development issues, I videotaped her for hours on end. My other children made cameo appearances in the background of these and I am now thankful for any little shot of them. Now, I collect photos of my kids from those years, like a detective trying to drum up eyewitnesses to some crime. Bit by bit I am reconstructing the photo memories of that time for their sake and mine as a mother.
The memories are just not the same for that short period of time. They are all dominated by Sophia and it’s not even her fault. Regrettably, it’s mine. I would have been better to just tag team with my husband or work harder to get a sitter.
We did learn along the way from our mistakes and found creative solutions. But, those years don’t come back, so each event now is treasured a little more special. The lack of photos in their albums during those years represents the reality of her sensory integration disorder and having a sibling with special needs. I can’t take that out of their history no matter how badly I want to. It is their history, it is their family and it’s okay to acknowledge it.
Look back advice: Find a way to tag team events, have your spouse go to one while you stay home with your sensory child and next time you can switch it up. It’s also great to have another parent from the same grade or team that you can explain your situation and ask them to take a few extra photos of your kids while their camera is already out. My advice is to plan ahead instead of winging it and forcing your sensory child to be part of something that they really can’t handle. Better for two or three to go and enjoy the event than everyone go home disappointed.
I am asked very often what I noticed early on with my daughter, now diagnosed with PDD-NOS and Sensory Processing Disorder,” that concerned me. I had kept a journal for years about my emotions through this time period. I decided to pull them out and start a series on my blog about my journals of Raising a Beautiful Disaster. Depending where you are in the process, I hope these encourage you, strengthen you to help someone you know who is struggling or validate your emotions. Your feedback would be a helpful encouragement to continue with this series, so please share your comments.